September 9, 2004

Funny What Comes Out When You Just Start Talking

Since my RA support group only started meeting in June this year, the first two meetings felt stilted, more like meet and greet:

When were you diagnosed? Which Doctor? Hmmmm. Do we want to bring in any speakers? Oh, great.

Because of the Wine and Dine event put on by our local Arthritis Foundation chapter, we met on an off night. Only four of us could make it.

We met in a booth at a local Panera Bread. Typically we reserve the community room, but because we changed last minute, we had to make do. With only four of us there, it worked. It had more of a get-together feel: Dave ordered a salad, I got a green tea ice tea and a bagel. Joanna got there a little late because she was caught in a meeting at work and Jeff seemed to be more at ease sitting in a comfy booth rather than a wooden chair.

See, that's an RA thing- to notice someone likes a cushion-y booth rather than a hard chair.

But the power came in the talking. Not just the polite chatter of, I'm on Enbrel you're on Humira -- let’s compare, but "I never use the automatic handicap doors on my office building because I feel self-conscious about it."

Hey, wait a sec. I feel that way.

Or, 'when I have a flare up, it’s difficult to get my office door open.'

'I like the lever door handles opposed to knobs. Knobs are much harder to use on those days."

Yes, we talked about the mundane workings of doorknobs, how much pressure a knob will put on a swollen wrist as opposed to a lever, where you can use more of your body weight and have less twisting. But more importantly it was about the self-conscious aspect of it. I thought I was the only one who felt mortified over struggling with a door handle. I've wanted to talk about this kind of thing a million times. But with whom? Who else would know the joy that is a lever?

And then Dave asked about handicap parking. There have been times that I could barely move without the aid of a cane and yet I have never once inquired about a handicap sticker. I have always had the secret need to not be labeled handicap. And why? For pride? Ego?

Joanna and Jeff have never gotten one either. Dave has one he uses for the ice and snow. He's a little older than the rest of us and much wiser -- RA and winter freeze are a terrifying combination of trying not to fall and wondering if you will get up if you do. So why don't I get the sticker?

Only one of the four of us has. I am not the only one with this hang up.

And there is a power in this discussion because even though my thinking about getting a handicap sticker may be all warped by what I think it signifies, two other people think exactly like I do about it. Even Dave reserves it only for those days when the weather is bad. But we live with a chronic condition... why do we feel that we shouldn't use a handicap sticker?

Maybe it is for the same reason that I wear clothes that best mask the outward appearance of my RA. I wear skirts and pants that cover my knees, the joints that have taken the most visible beating from the disease. I almost never let people see them, see the way they look.

Maybe this is part of the way we cope, even if it is denial.

"You know what my pet peeve is," started Dave toward the end of our discussion. "When I see a car parked in a handicapped spot at the grocery store with the handicapped person sitting inside and the perfectly agile person jumping out of the car and into the store."

"Yeah," we all said back to him. And what we mean is, we're with you.

Posted by renee | Filed under:

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